I've always wondered where the money goes when I pay extra to the U.S. Post Office for a sheet of breast cancer stamps, when I buy daffodils from the American Cancer Society, or when I pledge a donation to someone running a race for the cure. Or, for that matter, when I give money to a Boston breast cancer center, which I do ever since I was terrorized by a lump that mercifully turned out benign.
For a long time, I've had a sneaking suspicion that the money goes to support business as usual for whatever institution collects it, and that there's little-to-zero connection between charitable giving and anybody's cancer. I've thought about trying to designate my donations for care of women who don't have insurance or for the grossly under-appreciated nurses at the hospital where I had my surgery. I've done none of these things, nor have I ever turned my investigative talents to tracking the stamp and daffodil money.
My ignorance and passivity are a small part of the larger phenomenon Ellen Leopold tries to explain in her social history of breast cancer. Why did the radical mastectomy persist for nearly a century as the gold standard treatment when it was so devastating and so ineffective? Why do so many women submit to medical regimes that do violence to themselves? Why does society charge individual women with lifestyle modifications and lump hunting and call it prevention? And why has there been so little progress in preventing and curing breast cancer?
In a curious way, the angry impulse that drives this book off course also powers it to a bigger critique than Leopold knows she's got. What's wrong is that Leopold seems to think breast cancer is unique among cancers and that, consequently, only a radical feminist analysis can explain why the fight against breast cancer was so half-hearted and why it took the shape it did. She sees the history of breast cancer as a series of battles between women patients and their male doctors, and these battles, in turn, as part of a larger cultural oppression of women. Profound gender discrimination, stereotyping, patriarchy, and cultural misogyny are her explanatory tools.
Of course, the premise is silly. There's nothing special about breast cancer, either in "the failure of the twentieth century to abolish" it (a fact she complains of several times) or in the general contours of our strategies against it. However, bag much of Leopold's gender analysis (though not all), and you get a path-breaking inquiry into the sociopolitical history of cancer writ large.
Time magazine's recent cover story on Katie Couric's crusade against colon cancer makes the point, for it fits Leopold's description of the breast cancer campaign to a T. First comes public education about how to spot the tell-tale signs, followed by exhortations to get screened, unpleasant though the tests may be. Next, there are morality tales about people who failed to help themselves and paid with their lives. (Cartoonist Charles Schulz, we are told, "resisted being tested despite the fact that his mother, two uncles, and an aunt died of colon cancer. By the time physicians discovered his tumor ... there was little they could do.") Then there's advice to individuals to eat right, take vitamins, exercise, and perform other lifestyle talismans to ward off cancer. There is only glancing mention of probable environmental causes of cancer with no corresponding advice to public officials to address them. Typically, too, Time soft-pedals the lack of effective treatments while hyping the "exciting" developments that are barely out of the test-tube and--oh, by the way--"not all patients can tolerate" (ponder that little euphemism for a moment). Above all, the story chirps cheery advice on early detection ("your best bet to beat colon cancer today is to catch it early") with nary a word about the nasty business of treatment and the often poor prognoses.
Leopold gets tremendous leverage on her social analysis of cancer because she dares utter the unspeakable question, the one pondered silently by everybody who's ever been through cancer treatment or nursed somebody through it: Why, pray tell, are devastating, excruciating, gut-wrenching, slice-and-dice, quality-oflife destroying, sometimes-lethal cancer treatments an acceptable form of medical care? What much cancer therapy does to human beings--deliberately and knowingly--would be considered torture, poisoning, and even murder, if it weren't done by people with an M.D. after their names to people with a lot of informed consent mumbo-jumbo over theirs. People routinely describe cancer treatment as going through hell. Why do they submit themselves and their children to it? Of course, a few cancer patients don't, and some elect to stop treatment before their doctors would cease. But they are the exceptions.
The simple answer, the one we usually tell ourselves, is that people submit to treatment because they see themselves in a struggle with death. "In extremis, they were willing to be guinea pigs," Leopold says about indigent women in late nineteenth-century charity hospitals. She might be talking about anyone who's been given the medical sentence of "terminal."
But that's too simple. Outside of medicine, the proverbial "remedy worse than the disease," with its implied calculus, is an injunction to refrain from the remedy. In the most famous of the Federalist Papers, for example, James Madison pondered how to cure the ills of faction with a new constitution and used precisely this metaphor to reject the option of curtailing liberty. When we understand something as a cure worse than the disease, we don't go there.
How, then, does a whole society come to accept the deluded combination of cancer prevention by private detection and cancer treatment by harrowing "cures"? We ask a similar question about all domination and all submission to governance that is patently destructive to a people and a way of life. It is a deeply political question. The great insight of this book is to put it to the American cancer regime. (It should be said, though, that Leopold applies the question only to the breast cancer regime; the reader has to do the rest.)
About breast cancer per se, Leopold has two answers. The small one is this: Radical mastectomy is just another act of violence against women, and the persistence of mastectomy is made possible by male domination of women. (She's more subtle, but the story comes down to this.) The big answer, though, gets it right on the money: "Once the basic treatment paradigm (radical surgery) had been put in place and become more readily available, its position could only be consolidated with the active support of the population it was designed to serve." Read the book as a story about how the cancer establishment got the active support of the American population, and you've got a new window on twentieth-century medical history.
Thus, Leopold says, "women had to be educated to accept treatment... . They had to become patients, to demonstrate, by their willing submission to treatment, their absolute faith in the therapeutic value of surgery." The organization we now know as the American Cancer Society was set up for just this purpose--to "influence public opinion" through a "massive public relations campaign" designed to reassure them with hope of a cure. "Surgeons were cast as heroic lifesavers, rescuing women from the brink of death." The campaign continues unabated in places like Time, though now specialists in chemotherapy and bone marrow transplants have edged out scalpel-wielding surgeons in the pantheon of heroes.
If some of Leopold's gender analysis is misplaced (therapeutic violence and the failure to prevent or cure are not unique to breast cancer), some of it is understated. In effect, for a long time all cancer patients were treated like women--dumb (as if their cancer could be hidden from them), passive (the doctor informed them what he would do to them), and submissive (blanket permission forms are still the norm--I was asked to sign two for my biopsy).
Moreover, a mostly male medical establishment could, and still can, organize such sick-making, debilitating, life-disorganizing therapies because it knew, and knows, that women will do all the necessary nursing--from hold-ing the vomit pans and cleaning up the incontinence, to calming the terrified and soothing the agonized. This is not to say that men don't do some of this nursing, but if women didn't exist, most of it wouldn't get done and cancer treatment could never be what it is.
Think I'm exaggerating? One of my friends told me how she was screened along with her husband when he needed a bone marrow transplant. She was asked all kinds of questions about her capacity to provide a support network. Suddenly it dawned on them that he would not be eligible for the transplant unless she could provide satisfactory caregiving. Next time I saw my internist, I asked her if it's true that having a family support system is an eligibility criterion for bone marrow transplants. She fairly interrupted me to affirm, "Oh yes, if someone doesn't have a support system, the transplant is doomed to fail." Her answer, a clinical rationale for hospital policy, reveals just how much the medical profession takes for granted a whole social system of formal and informal nursing by women.
I would be remiss if I didn't tell you that the book contains two extraordinary correspondences between breast cancer patients and their physicians. With Leopold's skillful glossing, the letters speak volumes about cancer care, and these two chapters alone are worth the price of admission.
One woman, Barbara Mueller, was a patient of William Halsted, creator of the radical mastectomy; their letters date from 1917 to 1922. After Mueller's mastectomy, Halsted would never have told her that she indeed had cancer but for the fact that she needed to know the diagnosis in order to file her health insurance claim. The other woman, Rachel Carson, corresponded with Dr. George Crile, Jr., in the early 1960s. Carson, of course, was the scientist and writer who launched the modern environmental movement. Crile was an early and outspoken opponent of radical mastectomies and couldn't get his views published in the Journal of the American Medical Association. Carson knew him socially and turned to him when she realized the surgeon who did her mastectomy had lied about her cancer.
How, you might wonder, can a surgeon convince a brilliant, constitutionally skeptical scientist that she doesn't have cancer--after he's done a mastectomy on her? One reason everyone should read this book is to find out.
But don't stop there. While you're at it, find out about the stamps and the daffodils, would you?